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Thursday, February 23, 2017

Tomorrow Might Be Worse- Love Today!

Having a chronic illness, or two, is like Weight Watchers for my energy system: everything I do costs energy points, and I only have a set number of points to spend each day. Every single action that my body takes, from the moment I wake until the moment I sleep, takes a certain amount of energy points. When I get to the end of the points, that's all there is. There's nothing left. And no amount of rest will replenish the energy points. Unlike the real Weight Watchers, I can't cheat and just spend a little bit more energy. The tank is depleted and that's it. Sometimes the tank of energy is empty by noon, sometimes I have enough to get through until 8:30pm. It all depends on what type of activities I spend my energy on during the day.

Things I never used to think about now drain me. Going grocery shopping costs me a lot of energy points. Because my kids have special needs, we spend a lot of time in doctors' and therapists' offices, and sitting costs a lot of points. When I sit still, the chronic pain that I have throbs and flares. I hate sitting still. It's excruciating. Making a phone call costs points. Having lunch with a friend costs a lot! I love being with friends, they make my heart sing. So although I refuse to give that up, I have to ration my points for the day accordingly. I know that after meeting a friend, I won't have enough energy for anything else that day. Listening to music with lyrics costs a lot of me energy points, because chronic illness has made my brain a thick, dull muscle that has forgotten how to flex. When I listen to music with lyrics, my brain tries to understand what the song is saying, which takes a huge amount of focus. When I'm driving, I can't listen to music with lyrics or I won't be able to focus on driving. And while we're on the subject of driving, that activity probably costs me the most points. There is so much going on when you drive a car, so many things you have to think about and pay attention to all at times. AND you have to SIT to drive, which we've already established is very difficult for me. Driving is the most exhausting activity that I do. If I drive a lot in one day, it takes me several days to recover.

When you have a chronic illness, in the back of your head you're calculating energy points constantly. If I have to take a kiddo to therapy, and sit in the waiting room and wait, I shouldn't plan to go grocery shopping that day. If I have a meeting with the school, cancel all other plans the day before and the day after, because stress sucks out all my energy points. If I have to have any conversations with other humans at any point during the day, deduct points. Being social is exhausting. I love it, but it's exhausting.

Not only do I have to figure out the logistics of life with four kids and two dogs, but I also have to always make sure I'm maintaining a positive balance of energy points. If I mess up, or don't plan well, or something unexpected happens, I may not have enough energy to snuggle with my little girl and read her books before she falls asleep. Or I may not be able to go to my yoga class, because even the fun things cost points. I don't have an endless supply of energy anymore. Which is hard for healthy people to wrap their heads around, I get that. People who are "health-challenged" have to count their energy points all day, every day, in order to get everything done that they need to.

Having a chronic illness feels like treading water. You never get to float, you're always working hard to survive life's demands. Some days it's easier than others to tread water while the seas are glassy and warm, but you're still working at it. On tough days, there is seaweed wrapped tightly around your ankles, pulling you down as you do your best to catch your breath in between the waves that roll over your head.

Always working. Never floating. Nothing is ever easy, nothing ever gets taken for granted. Which, if you think about it, is a pretty cool gift that chronic illness gives me. Chronic illness makes me appreciate everything. Chronic illness is unpredictable, and I never know if tomorrow will be worse than today, so during my "today's" I do everything I can to be happy and healthy and enjoy life. I don't know if this is the best day I'll have all week, so if I have energy to see a friend today, I'm going to grab that opportunity! If I have energy to get groceries AND walk the dogs, I'm doing it! And while I do it, I'll be rejoicing that although I feel like I'm dragging my body through quicksand- even on this good day- I'm outside in the fresh air, using my legs and enjoying my puppies. If I have the energy to write, today I will! Because I don't know what I'll feel like tomorrow. Tomorrow might be worse than today.

This is why being a friend with a chronic illness is difficult: you want to be able to commit to something and follow through, you want your friends to be able to count on you. But sometimes you have spent too many energy points dealing with life's everyday stress, and you don't have the capacity to pull yourself together and muster the strength for one more conversation. Being a parent with a chronic illness is the worst. Sometimes I'm so fatigued I find myself snapping at my kids when there's no reason. No reason other than I spent all my energy points before they got home from school, so now parenting seems completely daunting and impossible.

Often when someone has chronic illness, they look fine. My mom told me over the weekend that although she knows I don't feel it, I look vibrant, healthy, put together. What a nice thing to say! And what a tricky, sneaky thing for chronic illness to do to someone. I have a friend who has a chronic illness also, and we agree that we should come up with a spot system. On days when we feel only medium-horrible, we would wear purple spots on our skin. On super bad days, the spots would be green, etc. That way, how we look would resemble how we actually feel. Then the world might be more understanding if I say, "You know, I just can't go out for lunch this week, because I spent all my energy points dealing with my kid's school about his IEP, and my spots are FUSCHIA today!"

People with chronic illness get it. If my friend with chronic illness knows I've been out of town for the weekend, she also understands we won't be meeting at the pancake restaurant this week. Instead, she texts (Notice, she doesn't call, because that's too exhausting for both of us!) to see how I am and if I am recuperating from the trip.

Each person has their own energy point system, and their own spot system. Unfortunately, these systems are invisible to the naked eye, so it is vital that we never, ever, ever judge other people. You never know what someone else is dealing with. Sometimes the energy points are all used up, and your friend with chronic illness will disappoint you. Sometimes your friend with chronic illness has puce-colored spots and just can't keep your plans. Sometimes your Mama with chronic illness had to take you to a very long, very far away, doctor's appointment for your special eyes, and so Mama is running on fumes and doesn't have the normal patience she usually has.

Just know that although this chronic illness demands a lot- a lot of care, attention, calculating, energy- I won't let it take over my life. I will save up my energy points to have pancakes with you. I will ration my energy to read you bedtime books and snuggle with you. I will wait for rainbow-colored-spot days to do laundry AND clean the bathrooms. Chronic illness demands a lot, but you learn to manage it the best you can. Sometimes it's unpredictable and surprising and difficult. But it's important to maintain an attitude of gratitude in order to find the small gifts even on the fuschia-spot days.

3 comments:

Hana Copperman said...

Check out Christine's spoon theory on https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ That's it exactly

Anonymous said...

I understand what you are dealing with as well as a healthy person can. My husband is dealing with Lyme & co-infections for the past 17 years. Currently he is basically home bound because there just isn't enough energy to go & do things like he used to. He was only diagnosed 6 years ago. Wishing you all the best as you work on recovery!

Carrie said...

I'm so sorry your husband is suffering. This disease is so challenging. Sending big hugs!